PDA

View Full Version : Saliva help!



Nadine74
16th June 2012, 04:23
My father is really struggling with his MND diagnosis. He's trying to stay active but is increasingly finding this difficult. His mouth is constantly running of saliva and his gp is new to the disease says the patch and tablet(sorry) I don't remember the names are all he can do for now. He's been told wait till Monday and speak to the hospital. This has just left my father so frustrated and I know it makes him feel embarrassed so he won't go to the allotment with his friends over the weekend. It's so upsetting can anyone advise me?

Steve Corfield
16th June 2012, 09:03
My father is really struggling with his MND diagnosis. He's trying to stay active but is increasingly finding this difficult. His mouth is constantly running of saliva and his gp is new to the disease says the patch and tablet(sorry) I don't remember the names are all he can do for now. He's been told wait till Monday and speak to the hospital. This has just left my father so frustrated and I know it makes him feel embarrassed so he won't go to the allotment with his friends over the weekend. It's so upsetting can anyone advise me?

Hello Nadine, my wife has the same problem as your Dad. You could try Atropine Sulphate Eye Drops. Place one drop on the tonuge and it helps to dry up the mouth. I hope this works for him.

pete
16th June 2012, 09:04
Hi Nadine ,

Think your better being called night owl seeing the time you posted , The problem with saliva , i found was as you no longer swallow as you would have before , I now find i have to make swallowing a priority , not any longer a reflex action you did without knowing , its hard and remembering when too but it can make life easier , as for pills and patches dont know , but hope they help you dad , I tend to keep loads of kitchen towel now in my pockets just in case, and no side effects to worry about ,wish your, dad all the best from me.

regards
pete

JONESY
16th June 2012, 09:28
Nadine,
Your dad can try wearing 2 patches - one behind each ear. I assume they are hyoscine patches [scopoderm].

Chris

Nadine74
16th June 2012, 11:51
Thank you all so much especially Steve as my father has already been to the chemist to check it out. He has been told its only available on perscription so he'll be able to get it on Monday hopefully. As for the doubling up of patches well for my father one patch is making him constapted so I've advised him if one patch doesn't work and has side effects then take it off and see if your bowels start working as normal. I can see that everything we do will be trial n error.

And yes I should change my name, I hardly sleep now through the worry over my father. His GP's knowledge of the disease is somewhat concerning but I know they can not be experts in everything since I have read only around 5,000 people are diagnosed with this disease per year.

miranda
16th June 2012, 14:16
I have tried everything and nothing seemed to work. If one patch is causing problems, I was told to try half a patch. I now have glycopyrronium oral solution (suggested by my consultant) and is the best so far. You are right Nadine that most GPs are unlikely to be experts - I am the only patient with MND that our local surgery has ever had! Hope you soon get some more peaceful nights.

computatec
16th June 2012, 18:34
Hi Nadine

I have the same problem but do what Pete suggested in #3 above. He has given the correct reason why we have the problem.

Clive

Nadine74
17th June 2012, 01:22
No peaceful nights yet Miranda but I will speak to the GP and the speach therapist so thanks everyone. I really appreciate it.

berdbrain
7th July 2012, 12:52
I told my sis about these options to make the dribble less so, and printed out the MND Factsheet for her. She is on the patches since the beginning of this week, but she says they are making her sick? does anyone know if you get used to them or should she go back to the GP for another type of saliva control?
cheers

wheelchairking
7th July 2012, 15:03
my gp prescribes me baclofen which is prescribed for irritable bowel syndrome but has the side effect of restricting the production of saliva. It works for me although it can't be taken orally. I have to inject it through my stomach peg. It might be beneficial to mention it to your gp and see what he/she comes up with.

berdbrain
8th July 2012, 14:58
Thank you Wheelchairking, I'll keep this in mind for when she gets the peg.
thank you for the suggestion.

berdbrain
27th July 2012, 07:59
Thanks to all for your suggestions, my sister does now have half a patch behind each ear and this has stopped the saliva, however her mouth and teech are so dry and she wants to drink like a fish but can't because of her swallow. Pete how do you make yourself swallow? she is trying so hard but failing to be able to drink sufficient liquid. Is there anything you can do to help the mouth's dryness, I know it is crazy since she couldn't stand all the saliva but now has the opposite problem. Any suggestions please.
Also her tongue, as as you all already know it is the tongue's lack of movement that causes the major speech problem, won't do what she wants so the speech is deteriorating rapidly, her speech therapist has given her exercises which she tries to maintain, and she has become much faster on the ipad, on the plus side...any tips there tongue wise?

miranda
27th July 2012, 12:38
There is a spray called Glandosane which is artificial saliva and works well on a dry mouth.

pete
27th July 2012, 15:37
Thanks to all for your suggestions, my sister does now have half a patch behind each ear and this has stopped the saliva, however her mouth and teech are so dry and she wants to drink like a fish but can't because of her swallow. Pete how do you make yourself swallow? she is trying so hard but failing to be able to drink sufficient liquid. Is there anything you can do to help the mouth's dryness, I know it is crazy since she couldn't stand all the saliva but now has the opposite problem. Any suggestions please.
Also her tongue, as as you all already know it is the tongue's lack of movement that causes the major speech problem, won't do what she wants so the speech is deteriorating rapidly, her speech therapist has given her exercises which she tries to maintain, and she has become much faster on the ipad, on the plus side...any tips there tongue wise?
Hi
Berdbrain,
I was informed by the SALT lady , that any exercise with regard to your tongue is worth while but to be honest , i keep trying and it dosnt seem to help that much .but having said that .my speech is almost gone so it gets working when i eat , its hard work and the softer the meal the better but i find corn beef , cured pork and rice puddings are ones worth trying , its so difficult telling folk because one thing works for one and not another , but its down to trial and error, as for drinking , I can only take liquids via a straw, and water is the worst , I find coke a good one or fanta let the fizz go out ,,and coke flat is wonderful for treating tummy upsets , and not restricing to bland stuff try and see , I take my Brandy and coke every night after two or three i find i dont care much about anything ,!!!! I would advise her to try no matter how futile it may seem to try and push her cheeks out with the tip of her tongue and do that four times a side , the adage of use it or loose it , is so very true and never more than in MND , it may be that she cant but do try , any movement is better than none , we used our tongue so much when talking and now thats a bygone thing its pretty much redundant so keep onto her and practice in front of a mirror ,she can see if there is any improvement , and there is biotene a gel you swallow that lubricates your throat it helps with making stuff slide down , I do hope she manages ,and best wishes to you too for caring for her ,

What ap does she use on the ipad, would love to know , As for patches , again what suits one ?, Miranda has been dealing with her problems for a while now so her advice is more than valid, as is Jonesy, Just hope between us all we find an answer for her .

Regards
pete

berdbrain
28th July 2012, 11:49
Miranda and Pete you are so wonderful....I have sent all this info to my sis and her hubby and they are going to see the nurse at John radcliffe on Monday so hopefully she will help them get through the Riluzole nightmare and sort out the dry mouth and thirst problem. You hve such good suggestions. I know she will try them out and find what's best for her.
My heartfelt thanks once again, and I'll let you know how it goes.
X

berdbrain
28th July 2012, 18:53
Hi againn Pete, my sister in law will do tongue exercises immediately...thanks!
she also says:
'Tell Pete my app is called Predictable and I find it very useful as you know. I take the point about moving the tongue and will be doing that right now in a minute.

Also tell Pete to never ever again mention rice puddings!! Also tell him that the one drink I find refreshing and very tasty is Kopperburg pear cider, it seems to go down a treat.'
She is very set in her likes and dislikes...as are we all!

De gustibus non est disputandum as my brother always says!!! It means 'In matters of taste there can be no dispute' i.e. taste is personal.
She also has the glywhatsit olral solution so thanks for that Miranda too.

thanks again - hope you can get the app.
best wishes

luce
29th July 2012, 01:36
Hi,
as mentioned the Glandosine spray is very good for dry mouth. The other thing that can be useful is getting an ice crusher or smashing ice and feeding it to quench the thirst. we also got a 5ml syringe and dropped iced water onto the tongue to dissolve. you cant put too much as otherwise swallowing ability is needed. it needs to be iced iced to really make any difference with thirst quenching.

My mum decided not to take patches etc but managed by us cliping tea towels onto an apron/ pinny to catch the drips. i think the dry mouth problem could be worse than having the excess saliva as it can feel like a terrible thirst/ deyhdration

all the best everyone. PS with Glandosine spray it is good if it is chilled.

don't forget good oral hygiene if you are suffering from dry mouth.

take care
lucy

littlesister
30th July 2012, 10:40
Hello, as well as the patch and tablet, he could try sipping a glass of grapefruit or pineapple juice. This helps to cut through the saliva.

berdbrain
30th July 2012, 10:51
Just in case you didn't read my reply, from my sister in law, the app she uses on the i phone and i pad is Predictable and she finds it very good.
thanks again and keep fighting

pete
30th July 2012, 11:17
Just in case you didn't read my reply, from my sister in law, the app she uses on the i phone and i pad is Predictable and she finds it very good.
thanks again and keep fighting

Hi BB .

Yes I read your post, Sorry i didnt respond, . I did try predictable, but I tend to use Speak it , its simple like me, It does work welll and the voices are quite good , You have a good day and best wishes to the sis in law , hope she is ok

pete

bakeit Forum